Sunday, September 13, 2009

Intolerance

I have a confession to make. I used to believe I was protected. I could have everything I wanted. I've worked extremely hard, have thought through my decisions, and aggressively pursued my goals. I've always had a clear vision of my ideal life, family, and friends. And, over time, all of those goals were achieved through focus, hard work, and discipline.

Even when Tyler was diagnosed, I approached his cure in the same manner. I knew I could beat this. I'm not better than anyone else, but I do tend to be a lot more focused (Kathy calls it obsessed). With total focus, the elimination of all distractions, anything can be achieved. I set out to beat Tyler's cancer just like every other obstacle that has come my way.

I started by searching out other teenagers with cancer. One of the first was the family of Christian Barker. I never meet them, but their aggressive and proactive approach to save their son was just like mine. I saw pictures of their children, home, and lifestyle. They are just like us. Obviously their son would survive. Then came the families of Chase Donnell and AJ Piniewski. Educated, intelligent, successful, involved. They asked the right questions and researched the right places. Everything was done right.

But soon I learned the reality of cancer. A month after Tyler was diagnosed, Christan Barker passed away. It made no sense. Something was wrong. This is not supposed to happen. His death was quickly followed by AJ and Chase. Then, here at Children's, followed by Rob Kemp and our dear friend Brett Workman.

That was 18 months ago, and the list is still growing. Mason Woods, Trey Martins, Cameron Brown, and our good friend Ryan Salmons. On and on and on.


Matt Hupp's parents searched everywhere. Even as he went safely into remission they continued to cover all their bases. Zac Mason's dad called hospitals everywhere, searching into every clinical trial. Racheal Tippie's mom found a new trial and moved to Texas. They did everything right. But they all relapsed. Matt passed away last month. Rachael and Zac earlier this week. Sometimes with cancer, giving all you have to give is still not good enough. How do you fight something like that? Fighting cancer is like that Bob Dylan song, "When you've got nothing left to lose, you find out you can still lose a little bit more".



There are success stories. Tyler fought hard and beat the odds. As did Sinjin, Kylee, Tristan, and many others. You can win. It takes incredible fight. But it requires more. It also requires the fight of everyone else. It requires all of us.


Mason McLeod is fighting now. Several doctors have said there is no hope. They are wrong. They're confusing hope with statistical probabilities. Hope is not a scientific word, and requires no scientific evaluation. New treatments arise from the lack of hope, being created when existing medicine offers no hope. It is not a doctors place to tell an 11 year old boy to go home and die. Survival requires everyone fighting together.

So now I know the truth. Tyler has survived. But he was never protected. Cancer has no favorites. No one is exempt. No life style can protect you. No economic status, religious or political positions. Childhood cancer has complete contempt for everything we value. It is intolerant of everything we hold dear. Nothing will protect you. Nothing other than a total elimination of cancer from this world. It's time to focus. It's time to kill cancer. It's time to fight for the funding, resources and information we need to win. It's time for total intolerance toward anything that gets in our way.

We must become intolerant of poor government funding, intolerant of the petty private funding. We must be intolerant of politicians who approved a $30 million Childhood Cancer Act during election years, and refuse to fund the money after the election. Intolerant of the inaccessibility to clinical trials, the assembly-line protocol treatments, and doctors who withhold information about treatments at other hospitals. Intolerant of insurance companies that block treatments, dictate protocols, or stop payments midway through treatment.

We must demand more individuated treatments, more access to experimental drugs, more free flow of information between hospitals, greater access to new treatments, greater access to research data, full disclosure from doctors. We must support the families, eliminating every distraction as they fight for their children. We can beat cancer, but it must be beat the same way it fights. Total war. Total intolerance.

Mason McLeod can beat this. It will require everything he and his parents have to give, just as they have been doing for 18 months. But it will also require the rest of us. We must force doctors to work outside the box when the box stops working. We must discover more options and share them among ourselves. We must find the best doctors and share that information, creating a "Craig's List" for pediatric cancer.

Look at these young people. Look into their eyes. All they ever wanted was to live the life that you and I are living. As I look at them, I wonder. I wonder if they look back and ask, "What are you doing with your precious and wonderful life? What are you doing to earn what you have been freely given?"






Christian Barker





AJ Piniewski





Chase Donnell

Matt Hupp




Zac Mason



Brett Workman



Ryan Salmons




Cameron Brown


Trey Martins


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